@brianna-albers
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Kevin Schaefer started the topic Michael Discusses Possible Combination Therapy for SMA in the forum The SMA News Today YouTube Channel 5 hours, 30 minutes ago
Hey everyone, hope you’re all having a great week so far!
Check out Michael’s latest video here. In this episode, he discusses the potential of developing a combination therapy for SMA. This is a topic that researchers have been discussing for some time, and Michael goes into detail here. Hope you…[Read more]
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Kelly Miller replied to the topic Looking for a Social Worker in the forum Adults With SMA 4 days, 1 hour ago
Brianna, when you say your mom has handled everything, what do you mean by everything?
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Kevin Schaefer started the topic Motivation Monday: Halloween Ideas in the forum Adults With SMA 1 week, 1 day ago
Hope everyone had a great weekend!
So, Halloween is one of my favorite times of the year. I always love dressing up, watching horror movies, and eating plenty of candy. Obviously, the festivities this year will be very different. It’s a bummer that we won’t be able to go to parties or even crowded movie theaters this October.
Still, I’m…[Read more]
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Kevin Schaefer replied to the topic Do You Enjoy Reading? in the forum Adults With SMA 1 week, 6 days ago
I wrote a column a while back about how it’s become more difficult for me to read physical books, but I still do so as much as possible. You can read it here.
These days, I read what I can in physical form, and then I read a lot digitally. I’m currently about halfway through a Paul Simon biography, which I’m reading with an SMA friend. And Alyss…[Read more]
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Kevin Schaefer started the topic Podcast 67: Maylan Chavez in the forum Flash Briefings and Podcasts 1 week, 6 days ago
Hope everyone is having a great week so far!
Check out the latest podcast here. In this episode, I talk with Maylan Chavez from Miami, Florida. Maylan is an ambassador for the company EyeGaze Inc., which develops eye-tracking technology for people with disabilities.…[Read more]
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Kevin Schaefer replied to the topic Excitement Surrounding Scholar Rock's SRK-015 in the forum The SMA News Today YouTube Channel 1 week, 6 days ago
Hey Lupa, thanks for commenting!
While we don’t have a ton of data regarding this treatment yet, it’s promising that the FDA is showing a lot of interest in it. Plus, it works at the muscular level, and could positively impact the strength of trial participants. Hence, we wanted to emphasize that what we do know is really exciting.
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Kevin Schaefer started the topic Excitement Surrounding Scholar Rock's SRK-015 in the forum The SMA News Today YouTube Channel 2 weeks ago
Happy Tuesday!
Check out Michael’s latest video here. He talks about Scholar Rock’s experimental therapy SRK-015 and its potential impact on the SMA community. This episode is based on an article from our main website, which you can read here. Hope you enjoy all watching this one!
Do you have…[Read more]
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Kevin Schaefer replied to the topic Summer Recap and Starting Fall in the forum Adults With SMA 2 weeks, 1 day ago
Absolutely! Feel free to message me.
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Kevin Schaefer replied to the topic Summer Recap and Starting Fall in the forum Adults With SMA 2 weeks, 4 days ago
Hey Ari! Thanks for reading! Yeah, it’s been quite a year. But like you said, we’ll be able to get back out in the world one day.
Regarding my comic, it’s been in the works for quite some time. I wrote the script with a close friend of mine and a mutual friend of ours helped connect us with an artist. We considered Kickstarting it at one point…[Read more]
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Kevin Schaefer replied to the topic Greetings and New Beginnings in the forum SMA Forums Welcome Lounge 2 weeks, 4 days ago
Hey Ari! Glad you found us.
Yeah, I’m a big sci-fi and comics guru as well. Any favorite movies/books/comics?
Looking forward to getting to know you here! Please let us know if you have any questions.
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Kevin Schaefer started the topic Summer Recap and Starting Fall in the forum Adults With SMA 3 weeks, 1 day ago
Hey everyone! Hope you all had a great weekend.
Fall 2020 is here. As crazy as this year has been, I’m excited about this season. It’s one of my favorite times of the year, and I especially love Halloween. Already started my list of horror movies to watch!
Still, there’s a lot to mourn about this year, and it’s ok to recognize just how dra…[Read more]
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Kevin Schaefer started the topic Differences Between Evrysdi and Spinraza in the forum The SMA News Today YouTube Channel 4 weeks ago
In Michael’s latest video, he explains the differences between Evrysdi and Spinraza, both SMA therapies. Michael talks about everything from the function of each drug, to administration methods. Hope you all enjoy watching this episode!
Do you have any further questions about either of these…[Read more]
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Kevin Schaefer started the topic Motivation Monday: Staying Hydrated in the forum Adults With SMA 4 weeks, 1 day ago
Hey everyone! Hope you all had a great weekend.
Since my next Spinraza injection is Wednesday, I’m trying to be extra cautious about staying hydrated and eating healthy. I know it’s an obvious thing we should do with or without SMA, but it can be tedious sometimes. When you factor in getting to the bathroom or catheterizing, caregiver ava…[Read more]
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Kevin Schaefer started the topic Podcast 66: Chat on Evrysdi, SRK-015, and Recent Columns in the forum Flash Briefings and Podcasts 1 month ago
Happy Thursday!
Check out the latest podcast here. In this episode, Michael and I discuss news regarding the FDA-approved treatment Evrysdi, and Michael’s decision to switch to this therapy. We also talk about the clinical trial drug SRK-015, which is…[Read more]
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Kevin Schaefer replied to the topic Service Dog Saga Part 1: Adventure Awaits in the forum Adults With SMA 1 month ago
Glad it’s going well! Exhausting I’m sure but well worth it. Looking forward to hearing more about you and Horton!
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Kevin Schaefer replied to the topic Upcoming Adults with SMA Virtual Socials in the forum Adults With SMA 1 month ago
I hear ya. It’s been a very draining year. Today I was excited just to go to an eye doctor appointment lol.
That’s exciting about your nonprofit! Thankfully, there are still plenty of ways to connect with people virtually and do virtual events.
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Kevin Schaefer started the topic Upcoming Adults with SMA Virtual Socials in the forum Adults With SMA 1 month ago
Hey everyone! Hope you all had a great weekend.
I wanted to let you all know that Cure SMA is doing some virtual social events for families and adults with SMA soon. The next adult social will take place on Tuesday, September 22nd at 7:00 pm CT. You can contact Cure SMA for information about where to register and get on their email…[Read more]
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Kelly Miller replied to the topic When it Rains it Pours in the forum Adults With SMA 1 month, 1 week ago
How exciting, DeAnn, that you are getting almost a whole new life very soon! I remember when I was in college, my Psych 101 class taught us how any kind of change, even something good like marriage or a promotion, can bring stress into our lives. I’d be more worried about you if you weren’t feeling some stress.
I did a demo with the JACO a few…[Read more]
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Kevin Schaefer started the topic FAQs Regarding Evrysdi (Risdiplam) in the forum The SMA News Today YouTube Channel 1 month, 1 week ago
Hey everyone! Hope you’re all doing well. For those of you in the U.S., hope you enjoyed the Labor Day weekend.
Check out Michael’s latest video here. He looks at some frequently asked questions regarding Evrysdi and shares his perspective. Michael explores topics like cost, administering this…[Read more]
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Kelly Miller replied to the topic Fashion and SMA in the forum Adults With SMA 1 month, 2 weeks ago
Alyssa, I’m so excited to hear about your new job! I think both men and women who have disabilities struggle with the way “regular” clothes fit them. I for one look forward to seeing what you come up with as soon as you’re ready. Keep us posted.
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